Infantilization of people with disabilities must stop

My husband, Jared, and I are two weeks away from our journey to self-sufficiency. Last week our family moved into a rented condo. We spent time and money fixing the place and fixing the damage. Jared’s handyman skills have improved a lot so far. He likes being able to somehow “catch up” to his male peers.

In our society, there is an unspoken expectation that men should be able to do household repairs and other DIY jobs. Because he didn’t have the opportunity to practice these skills when he was younger, he sometimes feels left behind – although the speed at which he learns new skills suggests otherwise!

I have always known that Jared was a capable, hardworking and resourceful man. He often spent hours tinkering with our daughter’s broken electronic toys until he put them back to work. He sealed the jars far too tightly and watched in wonder as I struggled to open them. Then he would make a smug face and open their eyelids in one quick movement.

At first glance, his great physique, bulging biceps and thick forearms almost completely mask the fact that he has a chronic bleeding disorder. No one would guess that he bleeds almost every month.

I don’t think much about it either. I know for a fact that he is physically strong, and although he is having a bad day with hemophilia, he also recovers quickly. Better yet, it’s intentional on recovery.

While most people tend to avoid work and chores, he is attracted to them. He considers himself blessed whenever he can be “useful” to someone. It’s a refreshing prospect to have, and one that I want to incorporate into my own life.

To me, Jared is a self-sufficient and competent adult. I always say that we are equal partners in our marriage. Each of us has something unique and useful to contribute to our partnership – and now, to our own home.

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That’s why I’m surprised some people still see him as a kid. They sometimes even treat him as such by making decisions for him or doubting his ability to find what is best for himself. It may not be intentional, but it does happen.

People often communicate this message through their actions. It could be as simple as not letting him carry heavy objects for fear of injuring himself. The employer may assume that they cannot handle a typical office workload or that they will be less present due to their hemophilia and seizure disorders. It could even be an opposition to his desire for independence.

I recently came across an article on The Mighty in which collaborator Amelia Blackwater spoke out against the infantilization of disabled adults. Using sexuality as a starting point, she writes that people with disabilities are capable of “grown-up” things and have the same desires as most. Believing that people with disabilities “should” be asexual, naive and childish only breeds more misconceptions about who they really are and who they really are. It can also prevent them from reaching their full potential as human beings.

When I met some of my husband’s friends from his hemophilia organization, I felt like I was just getting to know people my age. Whenever we got together we would exchange naughty jokes, play music and board games and trade secrets. Aside from their state of health and perhaps their increased patience (a byproduct of chronic illness), nothing in particular sets them too apart from my other friends.

I don’t believe people with disabilities are inherently weak. In fact, the people with disabilities in my life are some of the strongest people I know. Viewing people with disabilities as weak or disadvantaged is unnatural. Just like racism or sexism, negative attitudes towards people with disabilities are learned.

Our young daughter does not think less of her father simply because he lacks a clotting factor. She doesn’t compare him to others. For her, he’s just a dad. He has strong arms capable of swinging her so high that her feet touch the ceiling. He’s patient with her every night, even when she’s both sleepy and cranky. He still cradles her in his arms and rocks her to sleep.

With us, the handicap is normalized. Hemophilia does not take away from our combined ability to make household decisions. And that’s how I hope it always will be.

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To note: Hemophilia News Today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard the advice of a medical professional and do not delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to stimulate discussion on matters relating to haemophilia.

About Michael Bill

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